Pramipexole: How long have the... - Restless Legs Syn...

Restless Legs Syndrome

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Pramipexole

Bloodhound669 profile image
15 Replies

How long have the Governments of the world known that Pramipexole was a drug that would eventually become ineffective and lead to horrible withdrawals? How long have they known there are better drugs with fewer side effects, etc.?

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Bloodhound669 profile image
Bloodhound669
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15 Replies
SueJohnson profile image
SueJohnson

Many governments still don't know.

Joolsg profile image
Joolsg

e-jsm.org/journal/view.php?....

As early as the 1980s.

pmc.ncbi.nlm.nih.gov/articl... 2006 reports were becoming more frequent.

pubmed.ncbi.nlm.nih.gov/175...

So medical experts have known for decades.

Government authorities and most doctors STILL don't know.

Bloodhound669 profile image
Bloodhound669 in reply toJoolsg

It's incredible to think of the unconcern for such a miserable malady. Finally! In the U.S. we may have someone new to head the HHs who will look out for the people, not the Pharmaceutical companies. RLS will still be a back-burner item but perhaps the funds will become available to widen the research.

SueJohnson profile image
SueJohnson in reply toBloodhound669

Don't count on it and he doesn't believe in vaccines and may not get approved.

Madlegs1 profile image
Madlegs1

The real issue is that medical training establishments do not address RLS.

They don't teach it on their courses.

And so the vicious spiral of ignorance continues to neglect at least 10% of the population.

And worse still, many national health governing institutions -(I'm looking at you NHS and HSE) still give out erroneous information as to the most up to date protocols for treating RLS.

And so sufferers continue to suffer horrendous torture when it is patently unnecessary.

I weep.

Niewiem profile image
Niewiem

Hi, so what are better drugs with fewer side effects than?

SueJohnson profile image
SueJohnson in reply toNiewiem

gabapentin and pregabalin

Niewiem profile image
Niewiem in reply toSueJohnson

ok, I see , we are so different and yet the same when it comes to rls. For me gabapentin and pregabalin what I tried did not cut it 100% which is ok but side effects were unacceptable unfortunately. Had to go to dopa drugs...I'm hoping I'll get 10y+ before augmentation kicks in. cheers.N

SueJohnson profile image
SueJohnson in reply toNiewiem

There is also opioids.

Niewiem profile image
Niewiem in reply toSueJohnson

where I live opioids are not prescribed but can buy a pack for 5 doll. in Cambodia hahah

SueJohnson profile image
SueJohnson in reply toNiewiem

Where do you live?

Hoochybaby profile image
Hoochybaby

my experience with pramipexole was horrendous I was initially on a low dose of the drug which in the beginning seemed to help but I found that I kept having to increase the dosage to keep my rls under control

After some considerable amount of time my rls became unbearable and I decided to seek privately a consultant at a private hospital because my GP hadn’t a clue.

Unfortunately the “ Expert “ increased my dosage of pramipexole to an extreme level and because I didn’t know anything about pramipexole at that moment in time I went along with it until I found this forum and was told that I was experiencing augmentation!!

I started to reduce the dosage over a period of time but it was hell no other word describe the experience

I now take Pregabalin and codeine and manage my rls

I suffer insomnia and constipation but put up with it

My message is keep off pramipexole this drug is truly awful

Bloodhound669 profile image
Bloodhound669 in reply toHoochybaby

Unfortunately, I am still suffering the aches and pains of spraining both my ankles in the midst of tapering off of the pramipexole and starting a very low dosage of Pregabalin (only 100mg.) I cannot give any advice or anecdote on this problem. For some reason, it is taking over three weeks with very little relief to the pain in the evenings when I try to sleep. I don't know if RLS is to blame for the pain or if the pain from the strains is giving a restlessness type of feeling. I am pretty confused about the whole thing. I only mention this because you stated that you suffer insomnia and constipation, which I also suffer from, it seems to have come about after I started this low dosage of Gabapentin. I do think that constipation may stem from the codeine in your case though. I cannot get any more opioids from my provider so I have to suffer a little longer until I mend more. You are correct about this augmentation it is pure hell. Hopefully, that part is over for you now. Whatever advice you get from this site, as to go next I hope you heed. The people on this site are top-notch and know their stuff.

Biscuitface profile image
Biscuitface in reply toHoochybaby

So sorry to hear this. Similar happened to me. Was your 'Expert' in the UK?

Hoochybaby profile image
Hoochybaby in reply toBiscuitface

Yes

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